A busy summer for our mental health reps

by Owen Griffkin, Mental Health Participation Officer

The Mental Health Service User and Carer Representatives have had an enormously busy summer so far this year. I have been with them all over Powys helping them get out and about around the county.

When I first started in my role as Mental Health Participation Officer in 2017 it seemed that I was constantly out and about around Powys. Most of my work involved attending meetings or events either on my own, or accompanying the mental health reps to their meetings. Obviously lockdown meant that much of work life moved online, and one benefit of this was that lots of these work meetings continued online. This allows us to have people from all over Powys, and sometimes Wales, present at a discussion instead of having to travel to Llandrindod, or Newtown or wherever the meeting is. This is really useful in some situations, and it has allowed the reps more access to people working in Mental Health services in Powys.

Unfortunately, there was also a downside, as there was less opportunity for the reps to speak to people in communities which is the most important part of their role. That’s why it has been so refreshing to start running Meet The Rep events all over Powys, and to start attending community events with the reps. I think I have driven more miles in the last month than I did in the previous year.

Sally and Sarah at the Help & Information event in Machynlleth

The current reps - John, Sally, Sarah and Rhydian, decided that they wanted to get back out and make sure people knew who they were, and who they could speak to if they wanted to have a say in the way the Mental Health service is delivered. Therefore in June we held two Meet The Rep events in Newtown and Welshpool Ponthafren, and also attended a community Help and Information event in Machynlleth and a Pride Picnic organised by Credu at Llanfyllin Workhouse.

The reps set up stalls full of information about their roles, and spoke to people about their experiences of mental health services. There were activities as well that were relevant to the event. For example at the Pride Picnic, Sarah made some paper fortune teller origami sets. These were fun and dispensed tips on self-care as well as drawing people to our stall.

Sarah Dale said: "We as reps have been extremely busy in the north of Powys, out meeting people and discussing the work we do and some of you shared your views on the service. I believe as reps we cannot represent mental health service users and carers without gathering feedback. Every piece of information we gather does make a difference. Sometimes we may be able to help get you in touch with other organisations that may be able to help such as community mental health advocates. I understand that from the outside you may not know what happened to your feedback. I want you to know I try my very best to ensure each issue is addressed and actions taken to ensure that the service is fit for purpose.

I really enjoy organising activities for community engagement and meeting different people and networking with local organisations. I like listening to other people's experiences. Just listening can make a person in a difficult situation feel less alone, and talking to someone who has no affiliation with a specific organisation (I am just another service user) makes them feel more heard and understood, and brings that trust that we will ensure that their voice is heard. It can give people hope.

After a long break hopefully you will see us out and about again real soon.”

Sarah and Sally at the Pride Picnic in Llanfyllin

The serious part of the events was making sure that we gathered feedback from people about their experience in Powys and added these to an issues log. This issues log is then taken to a quarterly meeting with the Service Managers for Mental Health in Powys and any actions that are taken due to the feedback are noted and can be reported back to the person who gave the feedback in the first place.

Sally Houghton-Wilson said: “Having attended a few events, it's been really helpful to understand people's opinions, point of view and feedback on how they are finding the services, and what works best for them, what hasn't been helpful, and what their expectations are. It's nice to learn all about their experiences. And gives a clear indication of what's lacking within the system.”

The reps have also been continuing with their normal duties, attending Engage to Change and the Mental Health Planning and Development Partnership, which takes up a lot of their time. In fact, the reps now chair the Engage to Change meeting. (The Engage to Change group has been established to more widely promote the Mental Health Planning and Development Partnership’s activity, to proactively challenge any stigma associated with mental health and to collect service user views / experiences, co-ordinate resolution and feedback on resulting change, to people using services).

There have also been three Patients’ Council meetings where the reps listen to people’s experiences on the Felindre Ward.

Sarah delivered three Self Injury Awareness sessions to foster carers, staff from Child & Adolescent Mental Health Services’ teams and school nurses. These have been very well received and are helping to give people who are likely to come into contact with people who self harm the knowledge they need to have a caring and compassionate conversation, and not judge the people they speak to.

John and Josh at the Wales Mental Health & Wellbeing Forum in Llandrindod

It was also a pleasure for Powys to host the quarterly meeting of the Wales Mental Health and Wellbeing Forum in Llandrindod. This national group is a chance for all the service user reps from around Wales to meet and discuss what is happening in their area, and prepare reports that are sent to the Welsh Government. As Powys was the host, it fell upon John Lilley to chair the meeting. John gave an overview of co-production in Powys Mental Health services and there was a lot of approval from the group in regards to the work we are doing here.

John Lilley said: “Having attended several national forums in the past, and chairing one online during Covid, I knew roughly what was expected when it came to chairing in person. I was still a little nervous when the date came round and was grateful for Josh from Practice Solutions (who facilitates the forum) for co-chairing and Owen’s help in the regional update.

Knowing most of the attendees certainly helped calm the nerves and on the whole, I enjoyed the experience, though being a hybrid meeting I found it challenging to monitor the online screen for hands raised but with help from Josh I managed.

At times it was difficult to keep discussions relevant and on time but with gentle reminders of the agenda this became easier. Would I do it again? Yes and I also recommend people to try it. I found it a great learning opportunity and it boosts one’s confidence.”

Summer is traditionally a quiet time for the reps, a time to reflect on the year so far and plan for the future. However this summer they have really gone above and beyond what is expected of them in their roles, proving how much they deserved to receive the Outstanding Contribution award at this year's Powys Volunteer of The Year Awards.

If you would like to get involved in having your say in services, and be informed when there are future vacancies, then please fill in this expression of interest form here.

Shared Power - the training

How to use your lived experience to help in the planning and delivery of 

health and wellbeing services in Powys

Late last year the Health & Wellbeing team at PAVO launched Shared Power - An Introduction, an animated video, as a training tool for individuals who want to use their experiences of health services to help shape future services. The film delves into the different types of power, and how they interact with each other, when service user and carer representatives attend partnership board meetings in Powys.

The film is also aimed at those working in services so that they can avoid some of the barriers to co-production. Co-production means service users and carers work together with health professionals to design future services that work better for everyone. We received some excellent feedback about the film at the time.

Then, just a few weeks ago, came the perfect opportunity to show the film again - at the latest Shared Power face to face training session at our Ddole Road offices in Llandrindod Wells. Delivered by Owen Griffkin (Mental Health Participation Officer) with support from Sue Newham (Health & Wellbeing Engagement Officer), the training aimed to build the confidence, knowledge and skills of participants. Some of those attending were already volunteering as citizen or individual reps, and the training aimed to help them participate effectively in the planning and reviewing of services with public bodies.

Citizen reps volunteer their time, energy and passion to make a difference for others and to the services we receive, and are helping influence change at local, regional and national levels. Some of the participants are citizen reps on the Powys Mental Health Planning & Development Board and the Talk to Me 2 (Suicide & Self-Harm Prevention Forum), whilst others regularly sit on the Powys Regional Partnership Board.

Learning opportunities on the day included:

• How to influence positive changes in health and wellbeing services in Powys.
• Understanding the theories underpinning service user and carer involvement in planning services.
• Gaining practical experience of how partnership boards work with service users and carers in meetings.
• Recognising barriers to participation and how to overcome them.
• Finding out about current opportunities and how to apply for them.
• The opportunity to learn from current service user and carer representatives who sit on Health and Wellbeing Boards about their experiences.
• Learning assertiveness techniques and how to prepare for meetings.
• How to share personal experiences and avoid ‘trigger points’.
  
  

Here are some highlights from the day’s training.

Co-production demystified 

As a citizen rep, you are an equal partner with other professionals in the room. You are an expert by experience. But how do you gain the experience of other people and take their stories to a partnership board?

Owen updated the group about the work of the current mental health representatives, who regularly go out into the community at Meet the Rep events to listen to people’s voices about mental health services.

One of our experienced reps, John, spoke about how important it is to find out what is happening in the rest of Wales and about being aware of current mental health legislation. “Preparation is key! Ask yourself what are some of the key messages you want people to hear.”

John also described some of the resources available to people who want to engage in a co-productive way. The Co-production Network for Wales is a good starting point for finding out more.

And volunteering as a rep is a two-way street! We regularly hear that taking on the role “does improve confidence and help with personal recovery.”

Meetings - with remarkable people

Even introducing yourself at a meeting can be hard when in a room full of strangers, especially when most of them are there in a professional capacity. “A few years ago asking who I am would have been a really distressing question as I thought I was a nobody!”

Participants were introduced to Imposter Syndrome - it might feel daunting to be at a partnership board meeting, but as a rep you probably deserve to be there more than anyone else. “You are the most valuable person here,” someone was told at one meeting.

Everyone in the room is equal. Those working as heads of service for the NHS, or other statutory bodies, may be constrained in their work roles as to exactly what changes they can bring about and when - but they are people too. They may have a mother with dementia, a nephew who needs care, a friend struggling to access services…

As someone pointed out, “Town councils, health boards and councils are slow moving, which can be discouraging, but once they get going in the right direction they are hard to stop!”

Assertiveness is key - and learning the difference between being passive, aggressive and assertive an important skill. As a rep you need to think about being:

• Proactive about what you want to say.
• Confident and engaged.
• Self aware and aware of others.
• Sure your needs are met and that you are heard.
  
  

Hotspots, triggers & flashpoints

Participants spoke about their own triggers. These included being talked over, being told that there was not enough money, “mansplaining" and not being listened to.

One said, “I used to get in a tizz when people didn’t listen and I would storm out crying, but nothing good came from that!”

“You need a strong assertive Chair so that the meeting does not go off track and any problems can be shut down.”

“There will always be quiet people - it’s about managing a meeting to let all voices be heard.”

Dealing with difficult conversations

There was some very interesting group debate amongst the participants about what to do around some specific tricky scenarios which Owen had set up.

“Health staff are there for you. It’s about having the confidence and assertiveness to say, ‘I respect your views but I don’t agree with them.’”

“Ground rules are important to set the tone for the meeting.”

If there is a lack of respect someone suggested saying: “I have respect for your professionalism, so please have respect for my lived experience.”

The mock meeting

To round off the training session, Sue chaired a mock meeting designed to put into practice all the learning from earlier in the day. It turned out to be an extremely interesting and valuable exercise.

All those attending agreed that they had benefitted hugely from Shared Power training, both from the learning and also the opportunity to network with others with a similar role.

And finally…

Would you be interested in joining these citizen reps to take grass-root views and opinions to local board meetings where service providers can find out what is working and what needs to change? For further information about becoming a citizen rep, in the field of mental health or health and social care, just get in touch with us by emailing owen.griffkin@pavo.org.uk or ringing 01597 822191.

The next Shared Power training session will take place on 13 September 2023. 

Do get in touch with Owen if you would like to sign up.

Shared Power training - your chance to make a difference!

Sarah Dale, John Lilley & Rhydian Parry - Mental Health Individual Reps

Do you use health wellbeing services in Powys? Do you ever think about using your lived experience to make a positive difference to the way these services are designed and delivered?

If the answer is yes, but you’re not sure about how to get involved, you could well be interested in a full day of free training around this important area. Our Shared Power training will run on Wednesday 8 February at our Llandrindod Wells office.

We spoke to PAVO’s Participation Officer Owen Griffkin about why Shared Power training is important and the opportunities it may bring to people who attend.

Who is the Shared Power training for?

It’s for anyone who uses health and well being services in Powys and feels like they could use their lived experience to help plan and deliver these services.

What will people who attend get out of the training?

We will be looking at how health and wellbeing services are planned in the county, and the importance of the voice of the people who use these services in helping to make sure the services are run in the best possible way.

People might not know that their experience can be massively important in helping to make health provision better and there have been some big changes over the last few years that have been made because of what issues people have raised.

It can be quite daunting for people to share their stories, which can sometimes be traumatic, so we will look at how to share their experiences. There will be lots of practical exercises, and also we will talk to some of the current service user and carer representatives who sit on the partnership boards responsible for making decisions around health and wellbeing.

What can people do with the knowledge they learn?

A lot of the subjects covered will help with people’s everyday lives. We will have some assertiveness training, and look at how to prepare for meetings and confidence building. We will also look at discussing difficult subjects that can be quite personal to someone.

There will also be a chance to see what current opportunities there are in Powys for people to get involved and make a difference straight away. We try to have as much fun as we can whilst learning, and we will make sure there are lots of practical activities to try out what we are teaching.

Why is this training important?

The Well-being of Future Generations Act in 2015 made it a requirement for Welsh public bodies to involve the people who use, or who care for those who use, health and well-being services. The more people who feel confident in getting involved in this decision making, the better the services will be for anyone who has to use them.

People who have attended previous training sessions have gone on to help make really positive changes in Powys and Nationally as members of health and well-being partnership boards , volunteers for Powys Patients’ Council and leading awareness sessions for social care staff on issues important to them.

There are many more opportunities now to get involved than there were before COVID, and health services are always looking for people with lived experience in lots of different roles.

The people we work with in participation at the moment all say how much it has improved their own well-being because of their increased confidence and self-worth so I can really recommend getting involved and this training will be a great place to start!

If you want to find out more about the Shared Power training you can email owen.griffkin@pavo.org.uk

Or, you can book your place online HERE.

You can read more, and watch a video, about the concept of Shared Power, 

on our recent blog post Shared Power - an Introduction.

A look into Borderline Personality Disorder (BPD)

© Sarah Dale

Sarah Dale

Sarah Dale is a citizen rep in Powys – an unpaid volunteer who sits on the Powys Mental Health Planning & Development Partnership to share the voice of lived experience. As a citizen rep Sarah previously sat on the Wales Mental Health & Wellbeing Forum (formerly the National Mental Health Service User and Carers’ Forum).

Sarah has also worked incredibly hard over the past few years as a regular contributor to the Engage to Change group, which is a sub-group of the PMHPDP. This group was established to "more widely promote the Mental Health Planning and Development Partnership’s activity, to proactively challenge any stigma associated with mental health and to collect "service user" views / experiences, co-ordinate resolution and feed back on resulting change to people using services."

And during the Covid-19 pandemic Sarah has also created and delivered a hugely valuable training session on Self-Injury Awareness to many of those working in the provision of statutory mental health services in the county. Sarah is absolutely passionate about raising awareness of mental health issues and brings an honesty and openness to the work which allows greater understanding for all those watching / reading / exploring more about these issues.

© Sarah Dale

Sarah's experience of Borderline Personality Disorder (BPD)

Sarah's latest project is an indepth look into Borderline Personality Disorder to promote during Borderline Personality Disorder Awareness Month this May.

"You are probably wondering... "what is Borderline Personality Disorder? And you are not alone. This is the response I get when I tell people I have BPD, and yet I still haven't been able to accurately explain what the disorder is, and how it affects me. 

The reason you probably haven't heard of the disorder is that most people with (BPD) have experienced a lot of stigma. Often being described as 'manipulative', 'attention seeking' and 'incurable'. You have probably seen over the years, celebrities opening up about their depression, anxiety or bipolar disorder, thus more people are speaking up about their own struggles.

However, no one wants to talk about the more 'scary' or 'shameful' issues like self-injury, eating disorders, psychosis and personality disorders."

After exploring What is BPD? Sarah considers why it has this particular name, what it's like to have BPD, some of the feelings that people with BPD experience such as extreme emotional instability, fear and abandonment, and people's struggles with a sense of identity. Sarah then turns to the positive side of BPD and explores the empathy and compassion that people with the condition experience, plus an often increased creativity. To finish off Sarah debunks some of the commion BPD myths, such as that people with BPD are incurable and / or attention seeking.

You can read the whole piece, A Look into Borderline Personality Disorder (BPD), on our Powys Mental Health website.

If you have any queries for Sarah, or experiences to share, then do pop them in the comments' section below.

© Sarah Dale

Read more from Sarah

Sarah has written for this blog previously on:

The Wales Mental Health & Wellbeing Forum – an update

Together for Mental Health consultation - a Powys view

On the Experts by Experience panel

And on the PAVO Health & Wellbeing blog:

Self Injury Awareness 

You can also catch up with Sarah on her Facebook page - Sarah Mental Health Rep.

Sharing power - in the planning and reviewing of services

Just before Christmas 2019 I attended this training event in Llandrindod run by my two Participation Officer colleagues – Owen Griffkin (Mental Health - above) and Andrew Davies (Health & Wellbeing - below).

The aim of the day was to build the confidence, knowledge and skills of participants, some of whom were already volunteering as citizen or individual reps, so that they could effectively participate in the planning and reviewing of services with public bodies. Citizen reps volunteer their time, energy and passion to make a difference for others and to the services we receive, and are helping influence change at local, regional and national levels.

Some of the participants are citizen reps on the Powys Mental Health Planning & Development Board, whilst others regularly sit on the Powys Regional Partnership Board.

Setting ground rules for the day

The key learning of the day was around: 

• Communicating confidently and effectively in meetings.
• Knowing where to access relevant information.
• Better understanding the process and procedures involved.
• Better understanding the public bodies involved.

As people introduced themselves at the start of the day it was really interesting to hear the views of those in contact with services, and others who had been citizen reps for some time already:

“Although organisations are individually very good, together they shall never meet.”

“I like to become a thorn in people’s sides. I enjoy arguing the point although I can accept both ways. A 360 degree view of services is so much better.”

It’s not possible to cover the full extent of the training in a short blog post, so I shall just highlight some of the particularly interesting discussions which took place on the day.

Representing other people

As a citizen rep you are an equal partner with other professionals in the room - you are an expert by experience. But how do you gain the experience of other people and take their stories to a partnership board?

One of the reps spoke about how he represents his own experience as a carer, but also takes stories with him from local carers’ groups that he attends. “You need to be mindful for it not to be just about yourself but to cast the net and make the representation whole. You are in effect a Citizen Rep (representing a group of people with a common interest) but also a Representative Citizen (giving your own opinions)." 

Another participant said: “It’s really hard to put yourself to one side. Sometimes you might be putting a viewpoint forward that you don’t believe in. It’s about delivering it in way that doesn’t put people off, or bore people, or become too personal.” There are some very polarizing issues about the medicalisation of mental health, for example, but it is important for a rep to balance any views s/he may have and give the other side as well.

Understanding other people’s context

Another experienced citizen rep pointed out that certain things cannot change. 

“There is no point banging your head against a brick wall that can only be changed from the top down.”

When things don’t go well – and when they do

Sometimes it can be easy to ask – “why are we here if we don’t have any influence?” It was felt that some meetings were a waste of time, and only “tick box” exercises. “Sometimes the public body will just move on to the next item on the agenda as if we have not spoken. We have been invited to speak, but it sometimes feels just so that they can tick that box.”

Someone representing a local charity described how it took her three years to be heard within one public body. But eventually her persistence paid off, and the organisation was finally able to achieve some funding for a much needed project.

It was, though, also agreed that sometimes staff within an organisation may also be struggling with the slow rate of change – but sometimes the decision making process, and the accountability attached to it, require that change to go through and be agreed by many different committees.

New reps often have very high expectations in the early days, but these need to be managed from the start.

“Don’t promise the earth. It’s the small steps that are important. And publicising the success stories.”

You said, we did

Everyone agreed on the value of prompt feedback from the boards about progress. “Even if that is – we’re still driving this forward but we haven’t got anywhere yet.” Otherwise there is an understandable tendency for people to think – “what’s the point?”

The mock meeting

In the afternoon we were pleased to welcome our former colleague Freda Lacey, now Partnership Manager Mental Health at Powys Teaching Health Board, to chair a mock meeting designed to put into practice all the learning from earlier in the day. It turned out to be an extremely interesting and valuable exercise.

All those attending agreed that they had benefitted hugely from the day, both from the learning and the opportunity also to network with others who had a similar role.

And finally…

Would you be interested in joining these citizen reps to take grass-root views and opinions to local board meetings where service providers can find out what is working and what needs to change? For further information about becoming a citizen rep, in the field of mental health or health and social care, just get in touch with us by emailing mentalhealth@pavo.org.uk or ringing 01597 822191.

Remembering Jill Dibling

Jill Dibling in 2017 with her artwork

Derek Turner writes:

It was with a deep sense of sadness that I learnt recently that Jill had been diagnosed with terminal cancer. Three days ago, I learnt that she had passed away. My sense of sadness deepened with the fact that I would be unable to celebrate Jill’s life at The Pales Meeting House in Llandegley on Saturday 14th December 2019. It was typical of Jill that she did not want visitors, she would manage her illness, and her final days, in her own way with the support of ‘her girls’.

Jill was a pioneer in modern thinking about mental health. She not only had her own lived experience but she had ‘lived expertise’ as well. By lived expertise I mean that she learnt valuable skills from her own overcoming of the challenges she faced. It was her ability to use this expertise to the benefit of other people that makes her stand out. 

Jill helped in the founding of Mid Powys Mind and later became Chair. She was equally involved in Powys Mental Health Alliance. It was in this later participation that I had most to do with Jill. The Alliance was run entirely by people with lived experience but it was Jill who was behind the radical approach to service provision that drew on her own expertise. Jill had a quiet tenacity that more often than not won the day when others might be sceptical about what could be achieved by people who were so often dismissed as mere ‘service users’.

Jill (right) with Pat Atkinson of Powys Mental Health Alliance in 2009

It would however be wrong to remember Jill just in terms of mental health services. She was a committed artist whose work has been described as experimental. She passionately believed in the benefits for some people in the creative value of art in mental health and wellbeing. Jill would sing with the Peace Choir at the Pales Meeting House, but, if asked, Jill would probably see her role as a mother to her girls as her most important contribution.

There was a positive energy from Jill that gave us all hope. She will be missed in by all those who knew her, and her contribution to mental health services in Llandrindod, Powys and Wales, should not be forgotten.

Jill (far right) at the launch of the Powys "Yellow Book" of mental health information in 2000

Freda Lacey writes:

Jill was always someone who was open to developing and growing her knowledge. She was very involved in the lottery-funded DIY Futures project and was a firm proponent of the abilities of people to be very much co-creators of their own mental health care and treating people as experts in their own care.

I knew Jill in the capacity of my working with her in Participation, her patience and care of working with others and her openness to listening to other people’s views and her encouragement of people speaking up and asking for what they wanted. She was always supportive of me and I felt her deep care… She’d always have time for a coffee and would, in my early days, offer me guidance or knowledge of a situation or history/story that was invariably really important and valuable to know.

Jill with colleagues from Powys Mental Health Alliance in 2010

Jill undertook some Open University courses that I supported her on and certainly our discussions about her essays and her dedicated focus on learning inspired me, she was always wanting to improve her knowledge and continue to grow and learn.

Jill was a skilled professional volunteer contributing outstanding knowledge and guidance to mental health services in Powys, particularly her support of individuals coming together as peers. She was recently awarded a life achievement award by Mid Powys Mind which was very well deserved. 

I will miss her, her quiet support and the way she would invite sharing. I will miss her steadfastness and extraordinary lived experience, her gentleness and yet her solid convictions on what was right and what was needed. Her loss in respect of mental health services in Mid Powys will be keenly felt.

Letting go – a poem by Jill Dibling 

Jill at the grand opening of the Wellness & Recovery Learning
Centre on Felindre Ward, Bronllys Hospital, in 2014.

The creeper went west
With the wind from virginia.
The tall trees went south
With the wind from the north.
The gardens went wild as
The weeds became stronger -
They thrived and they seeded
And then they took hold
Of the lawns and the beds
Where the roses were growing.

Then all became clear as
Their strength was revealed.
The moss covered stones and
The fungi grew bold
On the wood of the roof and
The door and the sills.
The pools formed and swirled and
Spawned life of their own.

Then at last we let go of
The home that had bound us.
The breath of the earth and
The light could surround us
And free us to enter
That world that had found us.


Derek Turner worked for many years as a Mental Health Development Worker at Powys Association of Voluntary Organisations.

Freda Lacey is the Mental Health Partnership Manager, Powys Teaching Health Board, and previously the Senior Officer Health & Wellbeing at PAVO.

Eating disorders' services review in Wales

by guest author Helen Missen

Powys resident Helen Missen, a passionate advocate and voice in Wales for change in mental health services, particularly those provided to people experiencing eating disorders, has been closely involved on the panel for the recent Welsh Government Eating Disorders’ Review. She tells us more about it. 

Eating disorders continue to have the highest mortality rate of any psychiatric diagnosis, across the world. They are often thought of as difficult to treat, though with early intervention, evidence shows a good chance of recovery. 

In Wales, and especially Powys, early intervention with specialist provision is still underwhelming. After my daughter became ill with Anorexia nervosa in 2009, I realised there was an urgent need for change. As well as a petition to the Welsh Government, I started to learn as much as I could about eating disorders and services, in Powys, Wales, the UK, and internationally.

When you, or a loved one, has something as complex as an eating disorder, the frustration of constantly going to somewhere like Child & Adolescent Mental Health Services (CAMHS), or adult services, where a couple of days of training does not make the staff experts, is demoralising.

It’s a bit like taking someone with a heart attack constantly to the GP and them saying – "I’ve read that in the book, I know this is what you’re supposed to do, but I don’t have any of the skills to do it."

Generally, a referral to the specialist is the norm in physical health. In mental health, a couple of training sessions deems a clinical provider a specialist. That, for parents and carers, and those with a diagnosis, is very frustrating. As well as dangerous.

The 2009 Framework for Eating Disorders was established by the Welsh Government on behalf of services. It was deemed at that time, that there was too little specialist input for eating disorders in adult services. CAMHS were, and are still thought to have enough generic help, something that does need to be changed.

Mental health eating disorder services are tiered from Level 1 - GP / school nurse / health visitor, to Level 4 - inpatient services. As a result of the framework four specialist adult eating disorder teams were set up at tier 3 level across Wales – one in the North and three in South Wales. Powys is covered by both the North and South teams at the moment. £1 million pounds recurring was given to those four teams, which obviously isn’t a great amount.

The four teams are run by psychologists and specialist trained nurses, with a couple of psychiatrists overseeing CAMHS but not necessarily in adult services. Clearly still underfunded, and with too few specialist staff at tiers 1 & 2, the strain on staff and patients continues.

My involvement for change began when I submitted a petition in 2010. The petition called for equal funding for CAMHS provision as there was for adult services.

It is well known that eating disorders generally start in the teenage years, around puberty. Although increasingly they are being diagnosed earlier and occasionally they may not present until later in life.

That petition is still running.

Unfortunately, services in Powys are very similar to how they were 10 years ago when the petition was first submitted, which is very frustrating for me. I have worked very closely with the eating disorder groups across Wales, and sit on Boards nationally and internationally. It grieves me that Powys hasn’t moved on in that time.

However, things are changing! 

In 2016 Public Health Wales was commissioned to do a refresh of the 2009 framework. Out of that came the recommendation that there should be a review of the Eating Disorder Framework.

“There now needs to be another major reconfiguration to move to align the service with the new emphasis on working seamlessly across agencies across Wales in the interests of promoting wellbeing and emphasising timely and effective early intervention. This is also to align with recommendations and directives in the NICE (National Institute for Health & Care) guidelines for eating disorders (2017), the Wellbeing of Future Generations (Wales) Act 2015 as well as multiple documents emanating from the Welsh Government in related arenas." 

The refresh came from Vaughan Gething, Minister for Health & Social Services, who commissioned Professor Jacinta Tan to do the review on behalf of the government. Professor Tan is a child and adolescent psychiatrist as well as an academic. She has a great heart for the children and families who suffer with eating disorder.

I was invited to be on the core team selected by Professor Tan, to help her gather information from the public. 

Unusually, for this type of large piece of government work, Professor Tan decided that to hear from the public first would provide the most important underpinning for the review. By holding four public workshops across Wales, one at each 'corner' of Wales, with a team of lay people who were representative of service users and carers facilitating the days, she was breaking new ground in the pure sense of providing the voice of the people.

The question Jacinta posed each day was: "what would be your ideal service?" which for any carer or person with an illness to be asked was quite monumental; a game changer in a way. Following the question, Professor Tan stood back and the day was run by the core team, with no input from clinicians. Never were the groups led in what to say... it was complete freedom. There were horror stories, and good stories.

Those workshops attracted carers, patients, people with lived experience, and a men’s group to hear partners’/ husbands’ / brothers’ perspectives. It was fascinating to listen to and be involved in.

At last people were given a voice.

By the end, all four workshops illicited very much the same pattern of what they wanted. The themes that ran throughout were: there are things that are really working well and amazing people doing the work, however, there are not enough specialists and very little specialist early intervention.

The underlying principles which people wanted:

1. Early detection and intervention. Helping people, like teachers and parents, to identify people who might have an eating disorder to have access to support and help.
2. Inclusivity. Never turn people away. Anyone in distress who thinks they are, or a loved one who might have an eating disorder, deserves a response.
3. To be person-centred. To have prompt expert help for those who might have eating disorders. Giving people what they need and trying as far as possible to deliver it to them where they are. To provide person-centred and holistic care for the person and the whole family.
4. Relationship based.
5. Recovery focussed.
6. Trauma informed.

There were 22 recommendations made by Jacinta which the government has taken on board. The entire 300 page paper has been sanctioned.

What does this mean for Powys?

The Health Secretary then wrote a letter to all the health boards in Wales, of which Powys Teaching Health Board is one, citing four recommendations to be upheld. Each health board had to give their strategies on how they will enforce the changes he requires:

1. Consider the review, provide feedback and identify where key incremental changes could be made to ensure that longer term service planning can align with the ambition of the review.
2. Work towards achieving the National Institute for Health & Care (NICE) standards for eating disorders within two years.
3. Develop plans to achieve a four week waiting time across adult and child services recommended in the review within two years.
4. Reconfigure services towards earlier intervention.

These submissions had to be on Mr Gething's desk by 8 November 2019.

One of the recommendations from the Health Minister is that the borders between health boards are to be grey areas. As it stands, there is too much financial segregation between health boards. If one health board has a service that may or would benefit patients in another health board, it is not necessarily shared across the invisible (to the public) borders. Therefore, the current system is not not bringing the best care to all members of the public.

Betsi Cadwaladr University Health Board in North Wales, for example, has an early intervention team (SPEED) created specifically for children and adolescents. It is a multi-disciplinary team that assesses and then treats people with very early stages of an eating disorder in that area. This approach ensures substantial financial savings for a health board, and years of suffering could be avoided for the person with a potential eating disorder.

The CAMHS team in Aneurin Bevan University Health Board in south east Wales is also setting up a new SPEED team.

Under the current system in Powys, children are not referred to this vitally important specialist team early enough in the onset of the illnesses. 

I would encourage the CAMHS representatives in Powys to dial into the SPEED teams quickly. To start working without borders.

Early intervention gets people out of an illness, and into recovery, avoiding the entrenched state which can then last a lifetime. It is known that with eating disorders there is always time for recovery.

I know personally, and also from hundreds of people across the world, that to ask for and demand the specialists, to not be frightened to question the system, does bring about better treatment and best practice.

It works both ways!

Don’t be too proud to ask for help from expert sources outside Powys, be you a clinician, carer, or someone living with an eating disorder. Until my daughter got sick I had very little understanding of eating disorders. As with many diagnoses: until you’ve lived it you don’t understand how life changing it can be.

I have become an expert by experience. Though, for all of the experience I now have on both sides of the proverbial table, I do wish I had never come across eating disorders.

Would I do it all again? Without a shadow of a doubt. Changing a system takes time.

A small stone makes a large ripple. 

Further help

F.E.A.S.T is a national organisation providing help and support to parents, carers and significant others in the lives of people who have eating disorders.

BEAT is the UK’s eating disorder charity.

Anorexia and bulimia care is a national UK eating disorder charity.

Together for Mental Health consultation - a Powys view

Individual rep, Sarah Dale, on Llandudno beach

Our Participation Officer, Owen Griffkin, shares a report on the Welsh Government 

Consultation for the ‘Together for Mental Health’ Delivery Plan 2019 - 2022

On a sunny day (with scattered showers) I attended the consultation event for the Together for Mental Health plan 2019-2022. I was there to accompany one of our individual representatives, Sarah Dale, who felt it is was important for Powys to have a voice in one of the live consultations. This all day event was in a beautiful location in Llandudno, Venue Cymru, with a lovely sea view, which almost made the 150 mile round trip worth it.

Together for Mental Health is the Welsh Government's 10 year cross governmental strategy and was published in 2012. This consultation is to inform the last 3 years of the plan and to look at the priorities that have been identified and how they will be implemented.

The day was chaired by Ainsley Bladon, the Mental Health Strategy Lead at the Welsh Government, who is regularly seen at both regional and national partnership events. She introduced the delivery plan with a short presentation and then we moved on to the first question for discussion.

This was looking at the key priorities for the next 3 years and there were a lot of themes arising that we have come across in other engagement events. Some of these included - transition from Child & Adolescent Mental Health Services (CAMHS) to adult services, accessing mental health services with substance misuse issues, difference in service depending on location and funding of third sector (voluntary) organisations.

Also a big point raised was the accessibility of legislation and documents to the ordinary person. There is a lot of jargon and acronyms in the consultation document and this has proved a barrier to some people in disseminating the information. Ainsley said they had heard this a lot and they will look to change this in the future.

Sarah was very vocal about the need to ensure that basic service provision is met in Powys and that locally this is a priority - eg 24 hours crisis care. She also spoke passionately about the Talk to Me 2 suicide and self-harm plan, saying that it didn’t have enough mention of self-harm.

Next we were asked if the cross-cutting workstreams were appropriate to prioritise, which once again prompted some explanation requests about the technical language of the document.

These priority areas can be seen in this photo:

We were able to share some of the findings of the recent care and treatment plan engagement events held by Powys Teaching Health Board in Powys as this is linked to the ‘Core data set’ requirement, and also highlighted some of the specific issues in Powys around engagement.

After lunch, and a very quick stroll along the prom, we returned to look at what the room thought the key impacts would be and how we can increase positive effects whilst mitigating negative effects. The importance of third sector organisations was highlighted again, and a few people spoke about the relationship between staff and service users and the importance of being listened to in that relationship. 

We then ended with a reflective exercise on the effectiveness of the day and an assurance that results of the consultation will be fed back to everyone who attended. We closed with a thank you speech from Tracey Breheny, the fairly-new Deputy Director of Mental Health. It was interesting to hear that she is also responsible for Substance Misuse and Vulnerable Groups which hopefully augurs well for more coordination and understanding of the co-occurring issues of substance misuse and mental health. She also came out with the quote of the day when she said that all the comments would be ‘fed into the sausage machine of the Welsh Government’ and processed into a report.

All in all the day was definitely worth our while going although it is a shame that there isn’t an event closer to Mid Wales. It is vital that Powys has its voice heard in this consultation as we have a lot of issues specific to our county and I therefore urge anybody with an interest in the delivery plan for Mental Health services to fill in the online consultation before August 30th. You can participate by visiting the link on the following webpages:

Welsh

English

There is also another consultation event in Carmarthen on the 28th August that I recommend attending if you have the time.

Venue

Room TL5 (Ground Floor), Teaching and Learning Building, University of Wales Trinity Saint David, Carmarthen Campus, SA31 3EP.

The day will be structured as follows:

Morning 10:00 – 12:30 – Discussion of Priority Areas
Lunch 12:30 - 1:30

Afternoon 1.30 – 4.00pm – Considering Impact and Delivery

To take part please RSVP to Darren Lewis (Darren.lewis@gov.wales) including the following details:

Name, organisation (if relevant) and event you wish to attend (West Wales in this case). Expenses and lunch are provided on the day. 

If you fill in the consultation, or attend the Carmarthen event, please let us know at PAVO. You can email owen.griffkin@pavo.org.uk or ring 01597 822191. We might be able to help you organise lift shares and put you in touch with others attending.